When I joined the AMDA Pompe congress in San Antonio in October this year, it was a really great experience to meet so many other Pompe fellows from all over the world. It was striking that all English speaking guys seemed to be very well connected via Facebook, GSDNET and in their local groups.
At home, in our Swiss Pompe group we have right now only 15 members, 10 patients and 5 relatives. We meet only once a year, so there is not very much communication going on, except our rare meetings. But we know that there are about 30 Pompe patients in Switzerland, so our group has reached only one third of them, until now. A part of this problem is that Switzerland is a small country with only eight million people, but with four official languages, many other languages spoken and with regional and cultural quite different, enclosed structures.
All our current members are living in the German speaking part of Switzerland. Until now we have no French or Italian speakers in our group, which is of course not on purpose but it’s quite common that the native speakers stay in their own language region. So, what to do? As a first step we decided to set up a simple website, www.mpompe.ch, to offer information about our group, about upcoming meetings and other Pompe related news. As a second step we will contact all 30 Pompe patients with a letter and inform them about our group and the new website. Since data protection is very serious in Switzerland, we can't get the patient addresses from the national Pompe register, but we can send our letter to the infusion centres who will hand them out to the patients.
And our website has to be extended. We need to set up the site in French and Italian, and we want to add some easy to use blog, where every member can post their news or questions. This hopefully will lead to a larger group and to more communication.